Patient Advocacy Groups Spotlight Gaps and Resources in Women’s Health

New York, NY – At the 2025 Women’s Health Annual Visit (WHAV), the final session brought forward a powerful discussion centered on the voices of patient advocacy leaders. Representatives from the Well Project, the National Menopause Foundation, and the Fibroid Foundation highlighted the critical role of patient-driven organizations in addressing gaps in education, stigma, and access to care across HIV, menopause, and fibroids. Their presentations underscored the value of clinician–advocate collaboration in building more patient-centered healthcare.

Women and HIV: A Continuing Burden

Olivia Ford, editorial director of the Well Project, outlined the organization’s two-decade mission to provide evidence-based education, peer support, and advocacy for women living with HIV worldwide. While U.S.-based, the initiative has a global reach through ambassadors in Nigeria, India, and Latin America.

Ford emphasized that women—particularly women of color and women of trans experience—continue to face disproportionate burdens of HIV. Globally, women make up more than half of people living with HIV, and women of trans experience are 66 times more likely to be living with HIV than the general population. In the U.S., nearly 80% of women living with HIV are Black or Latina despite representing only a quarter of the female population.

The Well Project’s programs, such as “She, Her, They,” normalize HIV discussions in primary care settings and expand prevention messaging, including resources on PrEP (pre-exposure prophylaxis). Ford also highlighted the importance of language, noting that stigmatizing terms like “infected” can deter patients from seeking care, even when providers mean well.

Menopause: Breaking the Silence

Heidi Brown, a board member of the National Menopause Foundation (NMF), discussed the organization’s efforts to normalize menopause as part of women’s health. Founded in 2019, the group provides medically vetted, consumer-friendly resources aimed at dismantling the taboo around menopause and midlife health.

The Foundation has launched free “micro courses,” a series of on-demand video lessons just 2–3 minutes long, covering common symptoms such as hot flashes, sleep disturbances, and genitourinary syndrome. A symptom checklist, available in English and Spanish, allows women to track severity and frequency of more than 30 menopause-related symptoms.

Brown also highlighted advocacy work, including recognition of September as Perimenopause Awareness Month in 14 U.S. states and the creation of the Women’s Midlife Health Policy Institute. Outreach is extending into underserved communities through “Menopause For All” events at libraries, clinics, and community centers.

Fibroids: Addressing a Common Yet Overlooked Condition

Sateria Venable, founder and CEO of the Fibroid Foundation, shared her personal experience with multiple surgeries before establishing the nonprofit. Fibroids, which affect up to 80% of women by age 50, remain under-researched despite their prevalence. Venable noted that women frequently encounter dismissive recommendations for hysterectomy, highlighting the need for shared decision-making and alternative therapies.

The Fibroid Foundation now reaches audiences in 180 countries, supported by global ambassadors and partnerships with leading academic centers such as Mayo Clinic. Current initiatives include the CO-Equal study with Mayo, which incorporates physician input into fibroid diagnosis and management, and the upcoming provider portal to share the latest research and clinical insights.

During her remarks, Venable also described a new initiative: developing a national database mapping fibroid and menopause diagnoses by zip code using de-identified electronic health records. On the advocacy front, she pointed to a bipartisan package of bills proposing $150 million in NIH fibroid research funding, an endometrial cancer bill, and recognition of July as Fibroid Awareness Month.

Building Patient-Centered Care

In a joint discussion, panelists highlighted how clinicians can leverage advocacy groups to strengthen patient care. Resources such as peer support networks, provider-facing communication guides, and patient education toolkits can ease the clinical burden while improving patient engagement.

The speakers agreed that addressing stigma—whether around HIV, menopause, or menstruation—remains a shared priority. Peer connection, accessible information, and inclusion of patient voices were presented as essential strategies to bridge gaps between clinical practice and lived experience.

Key Takeaways

• HIV: Women remain disproportionately affected, with the Well Project advancing prevention, stigma reduction, and patient-centered education.

• Menopause: The National Menopause Foundation is expanding access to free, brief micro-courses, a symptom checklist, and policy-level advocacy.

• Fibroids: The Fibroid Foundation emphasizes alternatives to hysterectomy, promotes research, and drives national awareness efforts, with a new national database initiative on the horizon.

• Collaboration: Clinician–advocate partnerships can enhance patient-centered care by integrating trusted, community-based resources.